Literature Review

For young adults, caregiving isn't just hard. It can shape you for life. National Public Radio - CAI - Local NPR for the Cape, Coast & Islands; by Kat McGown; 12/23/24 ... There are days when Jordyn Glick, 27, can't eat or drink at all. She gets so tired and weak she can barely stand up. She has gastroparesis, where food stalls out in her stomach and doesn't get digested. It comes with unpredictable bouts of nausea, periods of agony in her guts, and malnutrition. ... Dakota Heath, her 26-year-old boyfriend of four years, is her watchman, "always picking up on the small things," he says. He's on alert for her next flareup, the kind that can leave her bedridden for a week. ... Young caregivers have always been there, doing all the same things that adults do — ... About one-quarter of all family caregivers are between 18 and 36, according to the National Alliance for Caregiving. One survey suggests that almost half of them are men. They're more likely to be Latino or Black; a survey in 2018 found that only 17% were white. They've just been invisible. "They fall into every potential crack that exists," says Melinda Kavanaugh, a professor of social work at the University of Wisconsin Milwaukee who is one of the few researchers who study this population. In terms of resources, "Nothing is targeted for a 22-year-old. Nothing."

Characteristics of patients enrolled in hospice presenting to the emergency department American Journal of Emergency Medicine; by Kayla P Carpenter, Fernanda Bellolio, Cory Ingram, Aaron B Klassen, Sarayna S McGuire, Alisha A Morgan, Aidan F Mullan, Alexander D Ginsburg; 12/9/24, online ahead of print Emergency Departments (EDs) frequently care for patients with life-limiting illnesses, with nearly 1 in 5 patients enrolled in hospice presenting to an ED during their hospice enrollment. This study investigates the reasons patients enrolled in hospice seek care in the ED, the interventions they receive, and their outcomes. ... Patients enrolled in hospice most frequently presented to the ED for trauma [36%; with 15% for pain, 12% for catheter/tube malfunction]. Most received laboratory studies and imaging. Nearly half of patients were admitted to the hospital and short-term mortality was high, particularly for patients enrolled in hospice for needs for ED care? Ie.,

New alliance steps up as voice for providers & patients HomeCare; by Hannah Wolfson; 12/3/24 Stopping Medicare cuts, ensuring Medicare Advantage beneficiaries have good access to care, passing groundbreaking hospice legislation and bringing homecare into the forefront are all priorities for the newly-formed National Alliance for Care at Home, said CEO Steve Landers. “We’ve got to start improving access to home health care, and the way that we do that is we end this march of payment cuts that are being set forward by Medicare,” Landers said at the Alliance’s Homecare and Hospice Conference and Expo, which was held in October in Tampa, Florida. ... The alliance has automatically enrolled members of both legacy organizations, but Landers said that for renewals or new members, participants will be required to sign an attestation that says they have a program in place for quality and compliance, that they monitor the Office of Inspector General’s expulsion list and don’t take referrals or staff from organizations on that list and that they strive to participate in Medicare’s quality reporting programs.

Nurse burnout and patient safety, satisfaction, and quality of care-A systematic review and meta-analysisJAMA Network Open; Lambert Zixin Li, MPhil; Peilin Yang, BS; Sara J. Singer, PhD, MBA; Jeffrey Pfeffer, PhD; Maya B. Mathur, PhD; Tait Shanafelt, MD; 11/24Occupational burnout syndrome is characterized by emotional exhaustion, depersonalization, and a diminished sense of personal accomplishment and is prevalent among nurses. In this systematic review and meta-analysis of 85 studies including 288,581 nurses, nurse burnout was associated with a lower patient safety climate and patient safety grade; more nosocomial infections, patient falls, medication errors, and adverse events; lower patient satisfaction ratings; and lower nurse-assessed quality of care. The associations were consistent across nurse age, sex, work experience, and geography. These findings suggest that systems-level interventions for nurse burnout may improve patient outcomes.

Facility- and community-level factors associated with hospice patient experiencePalliative and Supportive Care; by Mengying He, Ganisher Davlyatov, Gregory Orewa, Haiyan Qu, Robert Weech-Maldonado; 11/24For-profit and chain-affiliated hospices were negatively associated with CAHPS® scores. Organizational longevity and Medicare payer mix were positively associated with CAHPS® scores. Hospice community factors including competition, per capita income, and the racial/ethnic minorities' percentage were negatively associated with CAHPS® scores.

CMS to surveyors: Keep eyes open for hospice fraud Hospice News; by Jim Parker; 11/14/24 The U.S. Centers for Medicare & Medicaid Services (CMS) has issued a memo to accreditation bodies and state agencies advising surveyors to watch out for potential hospice fraud. The memo directs surveyors to refer issues to CMS if they suspect fraudulent activity. These actions were spurred by a rash of fraudulent hospices that have emerged primarily in California, Texas, Nevada and Arizona. “While the primary purpose of [state agencies and accreditation organization] surveys is to determine compliance with the Medicare Hospice CoPs, there are several elements of the survey process that can uncover concerns that would necessitate a referral to CMS for potential fraud,” CMS indicated in the memo. 

Person-centered care planning for people living with or at risk for multiple chronic conditionsJAMA Network Open; Brittany N. Watson, MD, MPH; Lilly Estenson, MSW; Aimee R. Eden, PhD, MPH; Maya T. Gerstein, DrPH; Maria Torroella Carney, MD; Vonetta M. Dotson, PhD3; Trisha Milnes, AuD, MHA; Arlene S. Bierman, MD, MS; 10/24This qualitative study identified 9 themes for strategies for, as well as facilitators and barriers to implementation of PCCP: (1) suboptimal quality of care; (2) person-centered, goal-concordant care; (3) multidisciplinary team–based care and care coordination; (4) prevention across the life course; (5) digital health solutions; (6) workflow; (7) education and self-management support; (8) payment; and (9) achieving community, health system, and payer goals. These themes identified reforms needed and components of care delivery models to support PCCP.

Advance Directives: How to make sure your end-of-life decisions are followed Bottom Line Inc; by Mathew D. Pauley, JD; 10/24/24 Nearly 40% of older Americans have some form of advance directives, such as a living will to communicate wishes about life-saving treatment…or a medical power of attorney appointing a loved one as proxy if they’re incapacitated.  Problem: Your wishes may not always be followed in real-world situations. Examples: Emergency paramedics typically provide CPR to restart a patient’s heart even if that patient’s living will says otherwise. And complex medical circumstances at the end of life often arise that force your loved ones to make judgment calls about what you really want. Bottom Line Personal spoke to clinical ethicist Mathew Pauley about how to make sure hospitals, medical providers and family members follow your medical wishes.

How quality, compliance, technology factor into hospice recruitment Hospice News; by Holly Vossel; 10/17/24 Quality, compliance and technology investments are becoming increasingly crucial when it comes to hospices’ recruitment and retention strategies as they seek to gain an advantage in the health care labor market. Finding and keeping quality employees who are able to keep up with the fast pace of today’s hospice compliance landscape has become a challenging feat, according to SilverStone Health CEO Alfonso Montiel. The Dallas, Texas-based health system provides palliative, home health and hospice, among other services. ... More than half of hospices nationwide underwent multiple audits simultaneously during 2023, according to survey findings from LeadingAge, the National Alliance for Care at Home and the National Partnership for Healthcare and Hospice Innovation (NPHI). ...

Racial, ethnic, and socioeconomic differences in critical care near the end of life: A narrative reviewCritical Care Clinics; Katrina E Hauschildt, Judith B Vick, Deepshikha Charan Ashana; 10/24Patients from groups that are racially/ethnically minoritized or of low socioeconomic status receive more intensive care near the end of life, endorse preferences for more life-sustaining treatments, experience lower quality communication from clinicians, and report worse quality of dying than other patients. There are many contributory factors, including system (eg, lack of intensive outpatient symptom management resources), clinician (eg, low-quality serious illness communication), and patient (eg, cultural norms) factors. System and clinician factors contribute to disparities and ought to be remedied, while patient factors simply reflect differences in care and may not be appropriate targets for intervention.

The HOPE assessment tool: What you need to know [free webinar from CHAP]CHAP press release; 10/2/24The HOPE assessment tool kicks off in 2025 and will catalyze hospice care to a new level. CMS developed the HOPE tool to inform future quality measure development and payment reform, eventually moving hospice from pay-for-submission to pay-for-performance. This session will describe the implementation of the HOPE assessment tool, content highlights, and its impact on hospice program operations in the next several years.Publisher's note: Dr. Jennifer Kennedy and Kim Skehan from CHAP are presenting this free webinar 10/16/24 @ 1:00-2:00 PM ET. Please click the link above for addtional and registration information.

Suffering revisited: Tenets of intensive caring Psychiatric Times; by Harvey Max Chochinov, MD, PhD, FRCPC Patients approaching death experience many losses, including losing a sense of self. This is perhaps one of the most substantive existential challenges dying patients face, as they find the essence of who they are—along with who they were or who they want to be—under assault. This notion of disintegration or fractured sense of personhood often lies at the heart of human suffering, which Eric Cassell, MD, MACP, defined as a person’s severe distress at a threat to their personal integrity. Although suffering can often lead to feelings of hopelessness and therapeutic nihilism for patients and health care professionals, it is important for those of us who care for the dying to understand the nature of suffering and how to be most responsive and therapeutically effective. [This author's Tenets of Intensive Caring include the following:]

Competency standards for quality are needed now more than everModern Healthcare; by Stephanie Mercado; 9/11/24Stephanie Mercado is CEO of the National Association for Healthcare Quality. Healthcare quality is foundational to achieving the overarching goals of every care provider: improving population health, enhancing patient experiences, controlling costs, and more. Yet we are not where we need to be – and sustainably achieving quality and safety goals continues to be just outside of our reach. Why? New research from the National Association for Healthcare Quality reveals that people working in healthcare define quality very differently from one another. They use a range of terms like compliance, utilization management, safety, equity, population health, value. When stakeholders see quality differently and see each effort to advance quality as separate and distinct, it’s no wonder we are not further along in this quest for quality.Publisher's note: This article discusses concerns including care, cost, the workforce cliff, and how quality is achieved.